Senate Bill sb1390

    Florida Senate - 2003        (NP)                      SR 1390

    By Senator Wasserman Schultz





    34-1193A-03

  1                    Senate Resolution No. ____

  2         A resolution recognizing Familial Dysautonomia

  3         as a serious genetic disease affecting certain

  4         residents of this state and recognizing June

  5         10, 2003, as Familial Dysautonomia Awareness

  6         Day in the State of Florida.

  7  

  8         WHEREAS, Familial Dysautonomia is one group of

  9  genetically distinct disorders known as Hereditary Sensory and

10  Autonomic Neuropathies, characterized by widespread sensory

11  and autonomic dysfunction, and

12         WHEREAS, Familial Dysautonomia has been found only in

13  persons of Ashkenazi Jewish extraction, is present from birth,

14  and results in a strikingly wide range of disease,

15  dysfunction, and suffering for afflicted children, including

16  lung problems, blood pressure fluctuations, poor growth,

17  spinal curvature, learning disabilities, and shortened life

18  span, and

19         WHEREAS, genetic research has shown that Familial

20  Dysautonomia is caused by mutations in a gene that is recessed

21  in one or both parents, and that the presence of the mutated

22  gene in either parent can be detected through genetic

23  screening and testing, and

24         WHEREAS, as of March 2001, genetic screening and

25  testing for Familial Dysautonomia became available to the

26  general population through laboratories established by the

27  Dysautonomia Foundation at New York University Medical Center

28  and at Mt. Sinai Hospital in New York City, and

29         WHEREAS, increased awareness of Familial Dysautonomia

30  will increase the likelihood that persons of Ashkenazi Jewish

31  extraction will timely avail themselves of genetic screening,

                                  1

CODING: Words stricken are deletions; words underlined are additions.






    Florida Senate - 2003        (NP)                      SR 1390
    34-1193A-03




 1  testing, and counseling, and that affected infants will

 2  receive timely and effective diagnosis and treatment, NOW,

 3  THEREFORE,

 4  

 5  Be It Resolved by the Senate of the State of Florida:

 6  

 7         That the Florida Senate recognizes June 10, 2003, as

 8  "Familial Dysautonomia Awareness Day" in the State of Florida.

 9         BE IT FURTHER RESOLVED that a copy of this resolution,

10  with the Seal of the Senate affixed, be presented to the

11  President of the Dysautonomia Foundation as a tangible token

12  of the sentiments of the Florida Senate.

13  

14  

15  

16  

17  

18  

19  

20  

21  

22  

23  

24  

25  

26  

27  

28  

29  

30  

31  

                                  2

CODING: Words stricken are deletions; words underlined are additions.